Eat, Drink and Be Busy

Rachael has not been fed via her PEG tube for 4 days!  She has been taking food via her mouth!  Tonight she ate the most I have seen her eat to date.  A H U G E helping of Lasagna!  She is drinking by sipping so we still hydrate her and deliver the meds via the tube.  We are trying to get her to take meds by mouth.  The bitter taste is tough for her to handle.

There has been allot going on and I have little time as it is late so here are the bullet points.

• We have a born again, God Fearin' Bible living Neurologist on the team! So:
  
  
  
  • Rachael gets an EEG Wed (Aug 31).
  
  
  • Thursday she gets an MRI for both her brain and for the pump catheter entry point.
  
  
  
  


• The headaches from the leak stopped 2 days ago.  Until today she has been more comfortable.


• Today she was not in a great mood at all.  She was groggy, had some real tough times with contractions and could not communicate well.


• We found that she has a fever of 99 and has some sensitivity around the PEG tube entry point.


• We are waiting until tomorrow to see if the fever remains.


• She is doing some neat things physically.  She has been turning her head to the left and holding it there for extended periods.  She is also able to push back and arch her back well.  She is stretching her legs some.


• We played hookey from church on Sunday and lounged about.  Saturday was a very hard day for Rachael and us.  On Sunday night we all went out to eat at Applebees with gift certificates we got from the families at school last  year.  First  time dining out with Rachael since January!

Nancy and I have been digging into Ecclesiastes and have been having some real fun reading it.  Sometimes it takes a Harem to make a man realize how good one Godly wife is!  Today, Oswald Chambers reminded us that we need to stay in the light as we continue on this journey with Rachael.   We have had some deep talks as of late regarding man's intervention in life and death matters, questioning why it all has to be so hard.  Tough stuff.  We know that no matter what, we need to look to our Lord, our Savior who reached down into this fallen mire and offers to pluck us out of the enemies grip.

We know that

12 Therefore let anyone who thinks that he stands take heed lest he fall. 13 No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.

The Holy Bible : English standard version. 2001 (1 Co 10:12–13). Wheaton: Standard Bible Society.

and there is the temptation to doubt, to see only the worst, to give up, to be angry, so many things.  Yet, through all of this our Lord has given us a way out.  His Word!  It is living and active and sharper than a two edged sword or a scalpel. It cuts and cuts deep to carve us into the likeness that Christ desires for us.  The more we move onward in this journey, the more we realize that all is vanity and chasing after the wind.  All that matters is that solid relationship with our Lord Jesus.  Not just knowing about Him or believing that He was what He said He was, but letting Him lead our lives.  Submitting to God and getting out of the way of what He has going in our lives.
If I look at what we are getting out of this  spiritually or what Rachael is getting out of this or what effort we have to extend or what trials Rachael has to go through, we are missing the mark.  It is not about Rachael.  Not about Nancy, Not about Daniel or Hanna or all of you and what any one of us is getting out of this trial turned blessings.  It is not about US.  It is all about Jesus Christ.  Keeping that focus in sight and losing any glance in the mirror, any self edification, permits the joy of our Lord to work through us.  Deny yourself.  How many times do we have to hear this?  Check out the Christian Living section and see how many books about You and Your well being there are.  It is all vanity, soap bubbles, here today and gone.  Truly it is only about Him!  What a great abandonment is offered us by His blood!

Please pray that the MRI blows the doctors minds!  That the EEG is unexplainable and that the leak just seemed to heal 'on its own'.  We need a good day of witnessing!  Pray that her fever is nothing or better yet that we remain tight to the light to be given discernment on what to do.

 

 

Medicaid Waiver

If you know of anyone who is on the Florida Medicaid Waiver program or who is waiting to get on the Medicaid Waiver program, Please have them contact me.  This would be individuals that are in critical need of medical assistance in the home.  If you know of someone in a long term recovery or under need of regular nursing care in home, then ask if they are on the program.  If they are, please have them contact me or contact me on their behalf.

I am not on Facebook, if you could Facebook the daylights out of this post I would appreciate it.

Burt
941-545-0713
burtandnancy@gmail.com

 

Van-Tastic

The Lord provided a van!  We will all be going to church together on Sundays!  The mother-in-law of a co-worker and brother in Christ was selling her Toyota Sienna LE wheel chair van that she used to transport her husband.  Vicki Sauder's husband Steven had suffered from a TBI for 17 years.  The Lord called him home in May and Vicki needed to sell her van.  She had need of it until the day my manager at work, Robert Smith, sent and email to my co-workers that we needed a van.  It was then that her son-in-law, Tim Crowe, came up to me and informed me that the van was available.  We got it with some money from donations from Family members and friends in Atlanta and the Carolines that totaled almost to the dollar what we needed to get the van!  It only had 40,000 miles on it!  So, we have mobility.  We went for a ride last night to the Jetties and to Bob's Ice Cream.  Thank you Jesus for supplying this Van!  Thank you Vicki for being a new light in our lives.

Please check out Vicki's blog at http://ssauder.blogspot.com/

Tired I am as I write this and Christine's post below reminded me to share that Rachael went to the Calvary Chapel School orientation the other night.  Many kids and parents that have been praying for Rachael were able to see how far she has come.  I was very worried that the stimulation would be too much for her and at one point I stretched my neck around someone's shoulder to catch a glimpse of her as she was surrounded by well wishers.  She was beaming!!  She was saying "hi" to folks and just loving every minute of it.  She laughed at Coach Green's "song" and just had a blast.  Eventually Nancy went off to the overflow room with Rachael and several teachers popped in to say hello.  It was a great night indeed and wonderful fellowship.  My prayers are with Mr. Beauchamp as he takes the reigns of the 3rd Grade class. I am thrilled at what he will come to know!

Rachael continues to improve by the small increments of brain injury recovery.  She is doing much better at swallowing 'thin' liquids like water, juice and skim milk.  We expect her to be able to take thin liquids regularly within a month.  That is our hope.  Once she is taking the liquids, we can get rid of the PEG tube  She is eating full adult portions of food prepared in a fashion that she can take in.

Please pray for Nancy to be sustained through the days.  Daniel is leaving on Monday for Calvary Chapel Bible College and it is going to be very difficult for all of us but especially her.  She could use a few texts to lift her spirits that day.  It is hard for her to answer the phone or be on the phone for very long during the days but a text message to her would be great.  941-323-6101

"But *seek first *His kingdom and His righteousness, and all these things will be *added to you. Matthew 6:33

Burt

 

Date Night-Back To Church-Daniel's Party-Pics

On Friday, Nancy and I were able to go to Lynette Haskins ?? birthday party at Kevin and Christine Sullivan's house.  It has been a long time since we have been able so sit and enjoy an evening socializing with friends.  Thanks to Tammy Smith for hanging with Rachael, and to her husband Jeff for setting us up with a firm mattress that has already proven to greatly help Nancy's aching back.  Rachael's care has been really hard on Nancy's back and that mattress has made a huge difference.  Thanks also to Hanna for giving up a night that she could have spent with friends to remain home with our guests.  Hanna rocks!  Have I said that before?  She had so much fun with the Ericka, Samuel and Sarah!  So, she stayed home and made three new friends.

Today was a big day for Rachael. Today was her first day back to church!  We rented a van from Wheel Chair vans for 120/day.  Yes that is much but it was great to get her into church.  Plus we got to try out a van and get a feel for what she might need if one comes comfortably our way.  I just wished Hertz had wheelchair vans!

It was not an easy morning getting her ready but we knew the enemy would be at play in this.  We all got through it and got Rachael into the van.  She was calm and happy on the ride.  Once we got to church, our friend Ian opened the door to a brand new day.  We strolled passed the kids in Sunday school, waved Hanna to follow us through the first set of doors to the hallway just before entering the sanctuary.  It was a very emotional time. We paused there in the hallway listening to Ray White singing "Oh No You Never Let Go.." we all burst out in unexpected and overwhelming tears.  We quickly gave up on stemming the tears, proceeding through the 2nd door entering the back of the sanctuary.  We rejoiced as the worship hit us with an embrace that is beyond comprehension.
Rachael listened intently to the sermon and at the end we responded to the call upfront from our shepherd and pastor, Bob Wulfing to anoint Rachael with oil as instructed in the scriptures and tearfully, he prayed for her.  He was taken over by the emotion as well but the Lord gave him the words to speak.
Pastor Bob was here within moments of being called the night of the accident.  He was here during the hellish mayhem.  He was with us very early on at the Venice ICU.  Today our beloved Pastor got to pray with one of his injured sheep in church after many months of keeping the hope that  she would one day be able to return. Rachael responded with such tears of release and joy.  She was in no pain, just crying for the many months of trials that she has so far overcome.  It was a milestone for all of us.

Afterward there was great fellowship.  People were gracious in not crowding Rachael too much, keeping the fun up and stimulus low. She had a blast.  She blessed so many in church today, so many that have prayed for so long.  One by one, folks passed by and greeted her.

After church we returned to the house, rested then went back this afternoon for Daniel's send off party at 4.  There were scores of people there to wish him well.  Rachael was present there too.  Daniel was in the fellowship hall with about 80 or so people eating ice cream and drinking great coffee from Black Gold Roasters.  After a while she became overstimulated by all the talk and we removed her to the sanctuary.
What a very special time it was!  In the sanctuary Ray White came up and asked if it would be ok if he played quietly for Rachael that it might help her to calm down.  At first my over protective flesh kicked in and I said "any stimulation is all the same to her"  then after a brief word with the Lord I gave Rachael the option.  She said she wanted Ray to play.  It was fantastic.  There were about 12 or so of us present.  Rachael's little cousins, two of her  uncles, two of her aunts (her Aunt Carol was the Martha of the day in the kitchen, THANKS CAROL!) Deb and Becca white, Barb Wulfing and a few others.  It was a time of quiet fellowship and sweet music.  Rachael calmed down almost immediately.  Once she did, the smiles came out and her cousins all gathered round her.  All of this just a natural, no pretense moment.  Rachael's friend and ours, Jasmine, came buy just after returning from a missions trip to Panama and blessed us all with her presence.  Ray ushered in a rare moment of sweet fellowship and calm.  Thanks Ray!

So that was the day.  A very big day.  Rachael got to go back to church!

Sadly, her graduation was yesterday at Word Of Life but the 2 hour up and back ride would have been too much for her at this time and the support she requires can not be stretched for such a length of time.  I know I speak for Rachael that she wants to thank her class for so much prayer and that it continues.  Those prayers availed much.

Rachael is flipping us out as she is moving various body parts quite voluntarily and more frequently as her mind finds new pathways.  She has raised her head off her pillow several times now when she stretches.  She is pushing her legs out more to stretch and moving her arms more deliberately.

 

I am including a few precious pics of recent events.

mmmmm-good!

 

 

 

 

 

 

 

 

 

 

[caption id="attachment_536" align="alignleft" width="900" caption="Rachael and Aunt Lisa share a laugh after church."][/caption]

 

 

 

 

 

 

 

 

 

[caption id="attachment_537" align="alignleft" width="900" caption="After the music that brought her peace, Ray posed for a shot with Rachael."][/caption]

 

Drink

Just a quick note to share that Rachael began drinking from a sip cup last night! Folks, Jesus continues to amaze us through the work he is doing in Rachael.
Please pray for her comfort during the headaches as doctors wait to see if her spinal fluid leak heals without surgery. We are also praying for a wheelchair van.

Swallow Test - PASSED!!

Quick note - Rachael passed the swallow test  with Flying Colors!!!!!!!!!!!!!!!!!!!  This is huge.  Now rehab can work on her chewing and eating and the end of the PEG tube is in sight!!!   Praise be to God for answered prayer!  Jesus Rocks !! Rachael Rocks and she can eat all the Cheetos she wants!

Someone Has Been Eating My Cheetos!, Humble Pie

Be on the lookout for a beautiful girl with big brown eyes, brown hair, a smile that would light up a black hole who has yellow dye #2 on her teeth.   Rachael ate two Cheetos today.  She bit and chewed!  She also enjoyed watermelon.  Nancy has been working with her on her eating to prepare her for the big swallow test tomorrow.  If she passes the test, the speech therapist will have the green light to start focusing on Rachael's eating.  All this eating and chewing is hands-over-ear-lalala to a speech therapist (a nod to Susan at Heartland!).  So with the passing of the test, the pros can do their thing.  She has been eating larger portions of the mashed meals that Nancy is preparing.  One other note, we believe she drank through a straw today as well!  Nancy will be working with her on that after the test.  She was able to suck the Coke up the straw, we just are not yet sure how much she drank.

Regarding my post rant on SMH and the Wound Center in Venice, I have been lovingly rebuked by a brother in Christ for my remarks and in the light of the word of my Lord, I was wrong.   A few verses that were shared:

Colossians 4:5–6 (NASB95)

5 Conduct yourselves with wisdom toward outsiders, making the most of the opportunity.  6 Let your speech always be with grace, as though seasoned with salt, so that you will know how you should respond to each person.

Ephesians 4:26 (NASB95)

26   Be angry, and yet do not sin; do not let the sun go down on your anger,

Proverbs 15:1 (NASB95)

1 A gentle answer turns away wrath, But a harsh word stirs up anger.

Romans 12:21 (NASB95)

21   Do not be overcome by evil, but overcome evil with good.

Proverbs 25:11 (NASB95)

11 Like apples of gold in settings of silver Is a word spoken in right circumstances.

1 Corinthians 4:7 (NASB95)

7   For who regards you as superior? What do you have that you did not receive? And if you did receive it, why do you boast as if you had not received it?
So, in light of the light within (John 1:4-5) I need to ask forgiveness to all who read the previous post.  Quite simply I was a bad witness to the extreme grace my Lord has shown me and every believer.  There is no excuse.  I have removed the offensive wording from the post.

Keep prayers up for Rachael's test tomorrow and Nancy as she travels with her.  Remember to please let us know if you have a line on a wheelchair van from someone local.  We are seeking to purchase one if we can find one that fits into our budget.

Burt